By Stacie Prada
Back-up plans and safety nets ease my worries. If I know I have options and support, my stresses for the future can be put on the back burner.
Which safety nets do I have control over? Which are vulnerable and might not be reliable? How strong are my safety nets, and where are the gaps?
Continue readingBy Dr Eva Jackson
Let us take a moment and go back into time. Remember your life before multiple sclerosis. Now stop and take a big breath as you let your memories unfold. You may visualize the days of going to a theme park and riding all the rides, or running on a sandy beach, just having fun. The days before watching your steps to ensure that there were not any barriers that would create a fall hazard or looking at the handicap parking spaces at your local grocery store to ensure that you did not have far to walk.
Now smile, because if you can visualize this, just know that you are not alone. Most of us are very independent people. People who never relied on others when making plans to go places. Independent individuals who very seldom had to go to the doctor regularly or spent days researching healthcare plans because this work was often done by your jobs.
As you think about those days, I will tell you a little secret. I have not been to a Christmas parade in over 5 years. During my last parade, I experienced several falls and sustained a shoulder fracture the next year. The risk is not worth the fulfillment of watching a parade in person.
Now MS has created a need in you to find safety nets in your home, communities, and healthcare. A safety net that you may have never thought you would need. A safety net could be financial, healthcare, family, or community support.
Let’s look at different safety nets and how they may vary for you.
Continue readingBy Samuel Fitch
When you think of a safety net, what comes to mind? Is it a circus act—a high-flying trapeze artist soaring through the air or someone being launched from a cannon, hoping to land softly?
The truth is, safety nets come in many forms. At their core, they are tools that provide security, comfort, and confidence.
Continue readingBy Dr. Eva Jackson
Summer is often marked by joy, laughter, family traditions, and road trips. Taking a moment to sit on your porch and listening to birdsong can provide an effective respite from the stresses and demands of a busy day. A simple walk around the outside of your home to get a daily dose of nature can provide someone living with multiple sclerosis a simple dose of much needed Vitamin D and improve overall health. These activities are also great for meditating and mindfulness exercises.
Continue readingBy Stacie Prada
More than any other time of year, summer shares my not-so-secret secrets. I’m not as thin, flexible, or strong as I used to be. It’s easier to disguise and ignore in colder weather when clothing is bulkier and outdoor activities are less promising.
This time of year encourages reality checks for how I look, feel, what I’m able to do, and how things that used to be easy now require more effort. While natural aging is challenging, multiple sclerosis adds even more difficulty to living well in later years.
Continue readingFor many people living with multiple sclerosis (MS), heat is more than just an uncomfortable weather condition. It can worsen symptoms and impact daily life.
Community members on MultipleSclerosis.net share their experiences when it comes to dealing with the heat. Here is what they wish people knew about how heat affects their MS. Read on for their insights.
Continue readingBy Samuel Fitch
Before my multiple sclerosis (MS) diagnosis, I never understood why I always felt so warm—especially compared to others. Looking back, I realize how fortunate I was to work in my family’s restaurant. One unexpected benefit? A built-in cooling station. On particularly hot days, the walk-in freezer or refrigerator offered immediate relief when my body felt overwhelmed by the heat.
Like many of my fellow MS warriors, managing body temperature—especially in the heat—is a constant challenge. For me, warm weather isn’t just uncomfortable; it can completely derail my ability to function the next day. It’s frustrating because, here in Western New York, beautiful sunny days are few and far between. When I miss them, I feel guilty. I want to be outside enjoying them with my family—but sometimes, the risk just isn’t worth it.
So what’s my advice for managing the heat when you live with MS?
Continue readingSpeaking up. Standing up for myself. These are all things that you learn as you grow and mature in life. Advocating for my health though, piece of cake. I know my body like no one else. I understand how my body responds, reacts, and refuses.
When I think of self-advocating for myself, I also think of speaking up not just in the medical sense, but also when something, or someone is not filling my cup. I think back on all of the instances in my younger adult life, and get angry with myself for not speaking up to say “no, my body cannot afford to go out tonight.” Or simply say something along the lines of “I’m sorry you don’t understand why I put my body and my health first, but it’s necessary for me to stay healthy.”
Continue readingWe all know the feeling. That surge of energy, the desire to participate, to feel “normal” for a while. Whether it’s attending a family gathering, tackling a long-awaited household project, or simply enjoying a few hours out with friends, those with multiple sclerosis (MS) often seize these moments with both hands.
But as many in our community understand all too well, this activity often comes with a significant price: the dreaded “MS tax.”
Here is what our community members had to say about how they deal with physical and mental exhaustion after overexerting themselves.
Continue readingBy Stacie Prada
If I could talk to my younger self, I know she’d be surprised, excited, proud, and likely a bit skeptical to learn that I’ve genuinely found fulfillment in imperfection.
I was a very timid and quiet child. I feared making mistakes, looking dumb, and not doing things right. I tried to avoid any possibility that I’d do something to be ridiculed or judged negatively.
I visibly shook throughout a presentation on candle-making to my fourth-grade class. It was torture to be the center of attention in a classroom. A high school presentation of a memorized poem wasn’t much better. Neither my nine-year-old self nor my 15-year-old self would ever have imagined that someday I would frequently present with confidence to large groups. Young me would be amazed that I overcame my fear of public speaking. People who have only known me for the last 10 years would not believe I was ever that shy and fearful.
Continue reading